Acceptance

After a casual conversation with someone I haven't seen in years who would only see something I've posted here and another person reaching out in fear personally to me worried about me, I've decided to clarify some things:

PsA and the immune system

There are many people with my disease younger than me in a wheelchair...I have to be prepared to baby this body and challenge it where I can. it's not a shock I have struggled severely with my immune system since I was a little girl aged 7 with head to toe psoriasis at that time and since with infections and flares. Which is the T cells of your immune system not working properly so psoriatic arthritis was not a huge surprise at 45 but yet I wasn't expecting it. Funny enough let alone my entire spine doing what it's doing with all this damage everywhere in just 2 years...as all the spinal damage is more of a resemblance to ankylosing spondylitis, so mine is PSSPA. Then there are other issues that go along with autoimmune diseases but we won't get into all that.

Damage to the spine

I have quite severe spinal damage to the bones and spinal nerves in my spine in addition to the damage to tendons and joints in the rest of my body - and have given into using mobility devices for gaining portions of things back to my life I can no longer do, or to be able to do without losing what I may be able to do in a day as I only have so much usage before its done for the day. But rest assured, I am still walking. My scooter is for distance and I have to medicate my body every day to do what I ask it to do for pain levels, but I have not given up and never will!!

Assistive devices to stay active with PsA

I love the water and it's my season to get active in my pool, but for walking or just standing, I can still do 20 or so minutes before I gotta sit down and then I can get up and go again. I do way better on a biologic, but that just makes me so sick and lands me in the hospital. Every damn time I try them I fail them and get deathly ill with infections. So treatment results in more pain and reduction of capabilities but at least I'm not completely without an immune system and hospital-bound every damn week. I just have a malfunctioning one that makes my body attack its bones and grow new ones and wear the others away.

Using assistive devices

I've accepted it and it's ok. Took me a long time to get to acceptance as most know working through fear and anger and denial of losing body parts and capabilities. If it happens to you or someone you know - you will understand it's similar to grieving a loss but it's your own. I do and will work hard at trying to stay active and these aids help. Actually, they are for distance or bad days and bigger jobs than what I can handle at that given moment.

So please don't act surprised if I have them or don't. I use what I need when I need it. I am a pretty good judge of my body at this point... ;) Rest assured I am still trying to keep it kicking and going and won't stop!! it's just a different life and you gotta pick what's most important as you pay for what you do and you can no longer do it all.

Mental health

So I'm fine.. just fine .. xoxo to all. Enjoy your summer. I'm actually better off mentally than I've been in about 2 or 3 years...or maybe my life really as I cannot say how hard this was for me to go through and overcome - but it sure makes you take stock of what's important and what isn't. When every time you're upset your body attacks itself, you cut out drama and people and needless time-wasting tasks and things and focus on what makes you happy. I am finally there. Truly not that life doesn't throw ya a curveball to test you lol!!

I was always and will remain a free spirit who LOVES doing things and was active my whole life before this so I am quick at finding ways to try to keep that up now that I've seen what I can't do anymore and mentally was suffering from it. I REFUSE TO LET THAT HAPPEN. I just have more physical limitations but I am learning how to work with those more and more each day... CAUSE I'M A WARRIOR!!!